Luck

Blogging from my iPhone. I guess I could have been doing this all along while I've been trapped in a hospital in London with the thickest firewall in the universe. God forbid I should be able to get on to my own blogsite! But no, no access. It's not safe. Humorous. So i privably couod have jyst bligged daily, even just some oneliners, from my phone like i'm doing now, but i have such an aversion to typos and spelling errors. Writing on an iPhone makes what you write look maybe worthy of a third grade first draft. How does anyone run a business from an iphone? Dont get me wring, i love my iphone, but i guess it just has its place... (I'm keepomg all the typos here jut o you can see how bad it is!)

So I seem to be 99% past pneumonia and today, I'm waiting. Waiting and hoping my neutrophils are past 0.5 because if they are, I'm going home. I had a biopsy on Tuesday that I'd love to know some preliminary results from, but I don't think that will happen today. All I want is nothing. No leukemia. Nothing. Except I do want the serenity to get through this waiting with some grace. If this biopsy has nothing in it, then I can go on to transplant soon. If my neutrophils are above .5 then I can go home today. I've lost count of the days I've been in here. But it's a lot. I don't even think I want to know.

I watched the documentary "More To Live For" with Allison when she was here. It follows 3 good souls through the transplant process. One, James Chippendale CEO of Love Hope Strength was out of the hospital in 18 days after transplant. That's amazing! What is that? Luck? Isn't so much of life luck? Sometimes I waste my time trying to place myself somewhere on the Luck Scale. And depending on what color glasses I put on, I am either extremely lucky or, if I put on those yucky glasses with the pukey color, all scratched laying on the floor, then I don't look so lucky. It's all perspective. Wouldn't it be easy (or lucky) if you could just grab a pair of crystal clear glasses of pure sight whenever you wanted? The Zen Brand.

 This just in. A bit of luck. My neutrophils are .54!

Pneumonia Phenomenon

I remember learning to spell these two words. Fifth grade? And I remember not fully grasping the meaning of either one at the time. Well, I understand pneumonia pretty well now. I never knew that it hurt. And that it can hurt not in your lungs, but in other places. I had such a terrible pain in my side, it woke me up.  I thought I broke a rib. I immediately got a massage which helped for five minutes. The doctors checked me for stroke, heart attack, all the acute creepy stuff. And Allison held me and reminded me to breathe through what seemed like the birth of five children until they could get enough pain killer in me. No fun! Allison has always managed to be with me at all these crucial moments. She was with me when my mother died.

 So after three days of morphine, I can't stop slurring my words. Which is then making me laugh. But while doctors were trying to diagnose to figure out what I have, I couldn't laugh. I had to keep a straight face and try not to react to Allison and Andy's jokes. While they were hooting and howling, I had to envision the moon reflecting on a calm pond.  I'd look at the clock and it'd be 12:10 and then I'd look again after trying so hard not to laugh, and it would be 12:11. Time went so slow! I felt like I'd been banned from my favorite watering hole: The Fountain of Comedy! I also hadn't realized how addicted I'd become to humor. A laugh addict. I think I spend most of my time trying to crack myself up. And of course my friends and family just chime in when they can.  It really works for me. It's quite a phenomenon! So when the Pneumonia vs. Phenomenon games began, it was clear it was going to be a tough match, but I knew that the Laughers would win in the end. I might be feeling some post-game injuries, but really, in the end, pneumonia is just a chest infection where freedom to laugh...that's a phenomenon!

What's a Mama Gotta Do to Get a Kiss?

Always Gotta Steal My KISSES From ARI... 

Ben Harper got it right...Enjoy!:

http://www.youtube.com/watch?v=BSTBs3IEVQs

Hair Today Gone Tomorrow

I am not sure what this entry will be about, but I have a feeling that it'll be a hairy tail (sorry, that is such a bad pun. Get it, fairytale?).  Today is 14 days after my last chemo treatment and I keep waiting for my hair to fall out.  My scalp had been feeling tender and when my massage therapist so kindly came to the hospital to work on me, she asked if I wanted a head massage and I automatically said "Yes!"  Who would say no to that?  But as she was giving me the massage, I couldn't stop worrying that my hair would come out in clumps in her hands and she'd run away screaming.  But it didn't, and she didn't. The last time it fell out was in August and despite further treatments, my hair has continued to grow in since.

The first time my hair fell out was the hardest.  That's obviously hard for anyone; hence the widespread sales of Propecia and Rogaine.  But I did what a lot of women do during chemo, I cut things off at the pass (yet another pun!) and I shaved my head, and then called the wig guy. But if I am honest, completely honest, I have to say that it was kind of nice not to have to "hassle" with my hair, even if it was just for a little while.

I have had all sorts of hair.  I have had no hair, short hair, bobs. Farrah Fawcett feathers, uneven hair (thank you Cindy Lauper), very long hair and in lots of different colors.  I have had touches of red, green, and pink.  But I will always think of myself as a blonde.  I come from a long line of blondes.  I remember a beautiful hand-painted photograph of my mother when she was quite young with blonde banana curls my grandmother had hand twisted.  My sister had gorgeous blonde silk hair offset so exotically by dreamy deep brown eyes.  And I was a little blondie too.  Later, Junior High was spent lying in the sun, spraying Sun-In and squeezing lemons into our hair.  Then, in High School, the blonde highlights began. Big Guns.  Since then, I've had chunky highlights, thin highlights, overlays, half heads, whole heads, ash blonde, golden blonde, dark blonde and very burnt out blonde.

So after my hair grew back, it was the first time in my life I saw its REAL color. And boy, by comparison, IT WAS DARK!   But it was healthy and soft, and bouncy, and fresh.  So I left it's color alone for two years and embraced accessories as closely as I had embraced hats when I was bald. And then after I"d moved to London and relapsed, and then waited for my hair grew back in again, I snapped.  I went to Clairette and I said, "Make me blonde!".  And she said, "Mais, Oui!"  So now I am blonde again, and it's really no big deal. Blonde, brown, grey, colorful, bald, it's just hair (or lack thereof). And even though there are approximately 14,000 salons in the United Kingdom and 670,000 barbers and salons in the United States, (thanks Google), I would hope that everyone who walks into one loves themselves, no matter how their hair turns out that day...

And so, last night I stumbled through my pictures with Allison, who is staying the week with me here in the hospital, and tried to pull out a timeline of my hair. Just for amusement's sake. 

PERFECT HAIR

PERFECT CHICAGO BLONDE

MESSY HAIR

BURNT OUT BLONDE

HOLDING ON TO MY HAIR

GETTING READY TO LOSE MY HAIR

FIRST HAT

WIG (WORE IT MAYBE FIVE TIMES)

DOUBLE HATS (BALD IS COLD)

STUBBLE

ACCESSORIES

STIFF COMPETITION

FRESH AND AU NATURAL

SECOND TIME BALD. BERETS IN FRANCE.

AND CASHMERE.

BLONDE AGAIN. AT LAST

What's on Your List?

I'm not sure of everything that's on my bucket list but can proudly say that I recently accomplished one that I can check off.

There's this great international Lego art project at http://www.dispatchwork.info/ that I stumbled upon last year. Started by a German artist, the concept is that you "dispatch" yourself to go out and fix a wall in need, with Lego. The task is to use Lego and only Lego. No glues or adhesives; just the tension of the bricks as they're wedged into the space to hold them in. The final products are stunning and they are all over the world. The minute I saw this I knew I wanted to do it. I have my own personal love for Lego but it will always be overshadowed by my son Isaac's love for Lego. He's a genius at it. He's my king of spatial thinking and I have marveled many an hour at how he can whip things together. For me, just following the directions on the boxes marked 12+ are a satisfying challenge.

So, London and Paris are two cities already taken among the long list of cities throughout the world that have received Dispatchwork. I wasn't sure when I'd be able to travel abroad again after my transplant. I knew that Morocco was my only chance to travel for a while. So Isaac and I grabbed a pile of Lego, stuffed it into a suitcase, and off we went to Morocco.

When we got to Morocco, nothing on earth could have prepared us for the giant distraction that is Marrakech. It's amazing.  All I wanted to do all day was peruse souks, gawk at people and colors and food. Although we saw a lot of good walls that needed patching along the way, we never had the Legos with us.

Finally, it was down to the wire. On Sunday, we were leaving to fly home in an hour and a half.  Isaac and I ran out of the villa where we were staying in search of a wall!  First, we came across a sheepherders farm. The sheep were so sweet and excited, bhaa-ing as we approached. By the time we had inspected all the walls, (which were immpecible by the way, everything had already been fixed), the shephard came out, and in a dance of mime I tried to explain what we were doing.  I soon realized I obviously failed, because he picked up Isaac and put him on his donkey for me to take a picture. He and Isaac were about the same size, which made the whole thing really funny. I took the picture and we ran off. Time was ticking. I felt badly I had no money on me to give him. We were just a running flurry of good-byes.

We searched on and finally found this long, clay brick wall with one square right in the middle, missing. No time to be picky. We quickly started building and realized right away, it wasn't going to be easy. The Legos slid around on the powdery clay left behind. A big piece needed to built first, with the right configuration, and then it had to be wedged in with tension in order to stay there.  It never would have happened if Isaac wasn't there.  I was chanting, "Isaac! Build! Build! Build!" Total time constraint.

And then all these really cute kids started coming around and watching, along with a couple of adults and finally a dad who spoke French. I explained the project as best I could. Although I think he taught that we were German artists? But anyway, I got some great pictures, and the whole thing actually came together! We gave them all the unused Lego and thanked them. I think they were half amazed and half thought we were crazy.

We ran back and everyone else was freaking out. They couldn't find us and were afraid we'd miss the plane.  I felt really bad doing that to them, but honestly, I wouldn't have missed that experience for the world. Check out the pictures. The children's faces. Maybe this was the first time they ever saw Lego.  But they were all so receptive and respectful of the project. Morocco is so full of art and design everywhere. These kids are growing up with this matter-of-fact sense of it.  "Of course art belongs here. Of course!  Colors are a part of our lives..."

So, thanks to Isaac for helping me cross one off my bucket list. That was incredibly fun! xx

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Matchmakers We Are!

We found out yesterday that one of the swab kits that we sponsored through Gift of Life became a match for a 60-year-old man with AML!!! This is the type of news a person likes to hear! 102 members in the circle have raised together $38,320 which has gone to opening 706 kits and having them tested. The more we raise, the more kits get tested and maybe another match! And another! It's a fun challenge. How many people can we get out there working to help save lives? It's a good way to spend your day. No? So, thank you from the bottom of my heart for contributing! And let's keep it going!

 I was thinking about $38,320 and what that really means. It's one year's tuition at Harvard, but without room and board. It's also a BMW Z4 Roadster. It's also about the average income of a US family in 2011. So, I think, in comparison, it's a lot of money. But you're also hedging your bets because if another match comes of this, you've cut your costs in half immediately! I think I'm saying that it's hard to put a price on saving a life. It's impossible. But I have to say this is a really fun way to spend money! It's like being at a casino. Putting coins in the slot machines waiting for those three pineapples to pop up. If it meant that would find someone a match, you wouldn't be able to get me to leave Las Vegas! If you want to throw the dice, please join us at:
http://www.giftoflife.org/dc/dina%2Drukeyser%2FMembers.aspx
It'll pop up.
Thank you again for small and big Blessings! Dina xx

Woke-Up Thinking

There’s a sweet greystone house at the end of a row in Lakeview on the Northside of Chicago with a precious little pre-school in it called The Mary Meyer School. It’s an unusual little place. It’s small.  There is a class of 18 children in the morning and 18 children in the afternoon. So, it’s supported by very few families at a time. But graduates are so devoted, they continue to support and espouse the virtues of the school for years to come. I woke up thinking about Mary Meyer today. Both my boys had the luck to spend one year there. After, Isaac moved on to kindergarten in Chicago and Ari moved on to pre-school London. 

On Facebook, I have this photo album of a collection of hearts that I’ve photographed wherever and whenever I find them. I recently added a photograph of a painting I did right after Isaac graduated from Mary Meyer. It’s a super happy painting with a heart in the middle. I call it Mary Meyer. Now, for me, the gut thing about Mary Meyer is very palpable. You walk in the front door and you are hit with a wall of love. Bam! Every time. And you’re like, “I don’t care WHAT they teach in there, I want to send my kid there!” 

After I spent some time there, I began to realize what they’re really doing. Where they’re placing their strongest value.  Of course, it is “play-based” like many other pre-schools, but really, what they are teaching is how to be a friend. How to be a person in a community. How to be a person in the world. But mostly, how to be a friend.  It sounds simple. But is it?

So maybe that’s why I woke up thinking about friends because they have been my saviors. And somewhere along the way, someone taught them to be able to do that. Even if it’s a family member, honestly, if you get along with them it’s probably because they’ve been able to treat you like a friend. My hope is that I’ve learned how to be a friend too, (and I hope that my friends agree!) I’m going to think hard today and track down where, or from who, I learned to be a friend.  Maybe I can thank somebody for it. And if you're my friend and you know who taught you how, thank them for me. Ok?

My biggest relief is that my children have this foundation inside them forever.  I watch them.  And I see that they know how to treat a mate. That they really care. This makes me SO proud. If they never learn anything else…

This life-long wisdom that is so valued at Mary Meyer seeps in so nicely.  I don’t think the kids really notice. It’s like real Vermont maple syrup on a Mickey Mouse pancake. It clearly belongs there, but it's not so easy to come by, much better with it, and sadly, not everyone gets to have it.  Idea for college core curriculum: Friendship 101.

Half a Convo is Better Than None

So I was quite sick yesterday. It was hard to pull it together.  I needed lots of fluids and antibiotics. The nurses again are the superhero team. I could feel a delirious bout coming on because I wanted to tell everyone how cute and sexy they were. Being deliriously dehydrated with fever is very similar to deliriously drunk. Wine: the truth serum. I probably should have told them how cute and sexy they are. Because they are!

But I was quite lucky that my friends Heidi and Craig (also cute and sexy) just landed from Chicago. And after they slept until the, "I'm on Chicago time" requisite 1:00pm, they walked over to the hospital and spent all day yesterday and today with me. They completely made me forget my sorrows. Starting with Craig blow-drying his trainers. It's ironic they have blow driers on the cancer ward, (basically no one has hair!) He laughed because I called them trainers. "They're sneakers!" (Although when you think about it trainers do make sense).  And I swear, it hasn't rained like that here in months! It doesn't really rain that much in London! Such skeptical looks I got!

It's so nice to be able to hang out with friends and listen to music and just talk. Once you have a kid's, or your friends have kids, an uninterrupted conversation is just a memory. Now it' important to find ways to be satisfied with twelve half-finished conversations. In Chicago, Andy called my hospital room, "Dina's Salon". And even in London, I have friends who like to sneak off and visit me. Maybe for some unadulterated women-time. And thank god! It means I get visitors! Yay! I figure, if you've got a friend with cancer, you've got every right to play the cancer card too.

You know, if this wasn't me, but a friend, I'd be so worried and upset!  I would just want to be there too.  But caring for someone affects your whole life as well! For example, this is how many people this weekend affected for Heidi and Craig. First, they have 4 kids, each with their own thoughts and feelings about when mommy and daddy go away. Then, Heidi's parents flew in from NY to babysit. (thank you!) Plus they hired 2 babysitters, Becky, and Alex to fill in where mom and dad couldn't. That's 10 people, to make a visit happen!

I think when friends are unwell, you just do everything you can. Right? In many ways, friends are people you've nurtured, as they've nurtured you. Mine have raised me, encouraged me, glued me back together, and laughed at all my jokes. (Even the really goop-y puns. Sorry. Wait, afm I sorry?) .  So you have a bit of parental protection and affection toward them. And when something goes wrong, you just can't imagine not being right there. So leave it to us to move to London and make it really difficult for our American friends to visit. It's hard to describe how thankful I feel for visits, sleepover dates, emails, cards in the mail, phone calls and messages on my voicemails. And I think for anyone ever wondering "what can I do?" when people you love, or even just like a little bit, hit rough patches, don't hesitate. It's good to keep in mind that something little, isn't.

No Passport Required

Ugh! Sooo sick! I managed to stay out of the hospital for a good six days.  I always have that hope, every round, that despite having just had my entire immune system completely knocked out by chemotherapy, that I won't spike a fever. That I'll be fine. But, as they say, it can turn on a dime. Which is why they worry about me when I sign myself out to go to my beautiful home to be with my beautiful family instead of staying in the hospital waiting around to be unwell. For them, that is ultimately safer. I get it. But who in their right mind waits around to get sick?

So being left in my own hands, all thru the night on Friday, I kept checking my temp because I had a feeling. A little bit of a chill up my spine. Not like an Alfred Hitchcock chill. More of an Into Thin Air chill. Just plain old cold. That's how fevers usually begin with me. In Celsius, 37 is normal. That gets confusing when you're born and raised in Fahrenheit and you're half asleep. What does it all mean? 38. How could 38 mean anything? Or at least anything dangerous. I had to shake off the cobwebs and call a cab for the hospital.

My bag was packed already with the clothes I took to Morocco. After they were washed I just threw them back in there. Wouldn't anyone assume that a bag packed for a vacation to Marrakech would do you just fine for a hospital stay in London?  So far I've been layering a lot of sundresses here and I haven't needed suntan lotion yet. Or my passport.

Staying Still

So far I have been quite lucky this round. No fever, and feeling well. Just staying home. Slept a lot today. Slept holding hands with the dog till noon. What a good girl she is. And then we relocated to the trampoline outside and lay in the sun.

I'm so appreciative to be home and hoping I don't spike a fever and have to go in. When my kids and then Andy came home tonight, all I wanted to do was hug them. A lot. Love them so much,.